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Tuesday, 31 March 2015

Synopsis: Two brothers, the pregnant wife of one brother, and the other brother's dog go hunting, declaring alcohol and firearms a family tradition. (You know at this point these people are going to die.)

The forest is closed, but being very naughty people (who are probably going to die), they go in anyway. The camera pauses ominously at a pile of shoes in the slide as they go through a disused playground.

.....

The dog is dead (I said someone is going to die). Someone in a weird mask is shooting at the man who owned it. (He's probably going to die too.)

...

The woman is telling her husband she's pregnant. They both have Xs on their foreheads, and the husband seems to be in his underwear. They're walking through the forest. (They're probably going to die as well.)

....

"Here are your pills, you really need to go to bed." Oh, that's not the movie, that's my son. Looks like the movie's over already.

Characters: There were some. The dog was a very convincing dog, disappointing to see it killed off so early, if it was early. The humans, I could take or leave. Actually, leave, they didn't seem very bright. They missed all the cues at the beginning that said they were going to die.

Camerawork: That significant pause on the shoes was really good, if it meant anything at all, which it might or might not have. It probably meant they were going to die.

Dialogue: Pretty dumb, and not much of it. I couldn't have heard much more than ten minutes of dialogue in the whole film.

Direction: I guess there was some direction happening. A bit hard to tell from what I saw.

Sleepability: Ten stars.

My Overall Impression: Watching a movie with lupus brain fog and fatigue means never having to know how it ended.

Wednesday, 18 March 2015

I know I'm not alone in this, because other lupies have told me they do the same.

Please don't think badly of me because of this but... (whisper) I no longer shower every day.

You see, lots of everyday things leave me utterly exhausted.

One of those things is having a shower. I can do it, but I have to just rest for half an hour, sometimes longer, afterwards.

All in all, a five minute shower takes a big chunk out of the energy I have available to survive the day.

So, I'm afraid, I only shower every second day.

But at least I'm not the only one with this terrible secret.

When I talk on social media about everyday things that leave me exhausted, one of the things that lots and lots of lupies will respond is that showering leaves them utterly exhausted and they have to rest. As it turns out, my embarrassing secret, isn't just mine. It's "normal" life for lots of lupies.

So if you're one of those people who enjoy a relaxing shower after a long, hard, day, make the most of it. For some of us, having a shower is a long, hard, day.

Thursday, 12 March 2015

If you've been following this blog for a while, you know that one of my biggest frustrations is that my

Pretty colours - not-so-pretty results.

brain just isn't functioning the way it used to do.

It's not just that I'm getting older. I haven't just been forgetting the odd thing here and there. I've been completely confused at times, and I've had the odd hallucination. (Actually, all hallucinations are probably odd.)

The latest person to look at my mental failings is a gerontologist (a specialist who looks after old people). She sent me for an MRI and a SPECT scan of my brain.

For those who haven't experienced either of these tests, I should explain what it's like.

For the MRI, the specialist double-checked when referring me that I wasn't too fat to fit in the machine (well, that really made me feel good about myself), and asked if I was claustrophobic. Again, at the radiology place, I was asked several times if I was claustrophobic.

When I was finally in the machine, and wondering if I might end up tightly wedged in there and not be able to get out, I realised that it was entirely possible to become claustrophobic left in this tiny space.

I was lying on a very narrow gurney, which automatically drove itself into a tiny slot (like the eye of a needle) in a large white machine. It made lots of thumps and grinding noises. Imagine someone very enthusiastic but not very musical, practicing percussion for a heavy metal band. The challenge is to lie as still as possible, not freak out about whether or not it is possible to actually get out of the machine, hope there's still someone out there operating it, and survive the worst percussion performance in history.

The end result? My MRI was perfect. No sign of anything whatsoever wrong. All good, except there were still no answers there.

Now for the SPECT scan.

This starts with a "resting" brain. That means lying in a quiet dark room, but not being allowed to go to sleep. Half-way through my time of darkness and silence, the nurse entered the room and injected a radioactive material into my arm. (No, I didn't glow in the dark, or gain super powers. Pretty disappointing, really.)

Then I had to lie down on a gurney, which threaded me head-first into another piece of techonology, which wasn't quite as loud as the MRI, but which, like the MRI seemed to take forever. Actually, if you've ever had a regular CT scan, it's pretty much the same thing. (I actually had a regular CT not all that long ago, but it didn't give any useful information, either.)

It was the SPECT scan that confirmed that actually, my symptoms have a cause. I have restricted blood flow in my left temporal lobe. There really is something going on in my head, and it can actually be seen in a picture (for people who understand those kind of pictures.)

What does this mean for me? For my treatment from here?

I have no idea yet. My GP called me in and gave me the test results. I have to wait another two weeks to see the gerontologist to see what happens next.

Is this caused by my lupus? The GP thinks probably so, after all lupus can cause vascular problems (vasculitis) and lots of parts of the body.

What happens from here, I don't know. After I've seen the specialist, I'll tell you what comes next.

How do I feel about it?

I'm ambivalent, really. I'm glad to actually have a concrete explanation for my cognitive problems. It's a relief to know there's something physically in my head - because there were times I wondered if maybe it was "all in my head" in another way. (Lupus is quite bad enough, I don't want any serious psychiatric problems as well.) On the other hand, I'm also bit anxious, because I don't yet know what this means.

Monday, 9 March 2015

I hadn't planned to do that, but the battery of my mobility scooter hadn't been charged and it failed fairly soon after I started my day out.

It was OK, I told my family. We'd just go slowly and still get everything done. I had my walking stick, and we weren't there to do much, anyway.

We really did go slowly. As the morning went on the pain in my right hip and left knee got worse and worse. Somehow, the local shopping centre was much larger than it usually is. I'm sure it was several kilometres between shops.

Eventually, we'd done everything we had to, and were heading back to the car. That was the opposite end of the shopping centre.

I found I was getting slower and slower as I walked. The carpark was moving further and further away. Each step, I wondered if I could make the next one.

Eventually, I had to call out that we needed to stop. Sitting in a coffee shop allowed me the chance to recover enough to get to the car.

Although we had spent about 15 minutes in each of four shops, the morning's outing had taken us three hours. That means my walking time, and all my rest stops, took up about two hours. (No wonder my poor little grand-daughter was starting to get a little irritable by the end of it.)

Checking the pedometer on my watch, I expected I had walked about a hundred thousand steps. Sadly, no. I've only done about 4500 steps today.

When I got home, I collapsed on the couch, turned on the television and passed out. My son woke me up when he cooked dinner. Now, I'm just about ready to go back to sleep.

But, hey, I walked around the shopping centre today. I'm just like everyone else.

Sunday, 8 March 2015

I had a needle for a test the other day. (I was injected with radioactive stuff so a CT scan could see the blood vessels in my brain - we'll talk about it in another post.)

Ordinarily, if I have a needle, and a dressing is put over it, I pull the dressing off almost straight away. This time, I couldn't get to it for a couple of hours (having to lie still with my head in a CT machine, and things like that happening.)

When I took the dressing off, it left a bruise. days later, the bruise from the actual needle is gone, but the bruise from the dressing is nasty and purple.

I usually have "mystery bruises". They definitely are bruises, that's not the mystery. I just have no idea how I got them. It takes so little to make me bruise that things I don't even notice at the time can come up as a huge purple bruise a day or so later.

I don't know if it's an effect of lupus, or if it's just me.

I do know it's not from my medications (or not just from my medications) because I was like this long before I was diagnosed.

So, if you ever meet me, and see that I'm covered in bruises, I haven't just been beaten up. At least, I'm not likely to have been.

Monday, 2 March 2015

I have gadgets to help me open jars, gadgets to help me move around, gadgets to help me organise everything.

My new Pebble watch.

So, would it be any surprise to know I have a new gadget? This was a gift from my son. Yes, it's a watch. I've had watches most of my life (usually I go for pretty little gold ones, not big bulky plastic ones.)

What's so special about this?

Well, it's a smart watch, and it's customisable.

Mine now monitors and tracks my activity and sleep. It's got a weight tracker, and if I have any kind of emergency, I can shake it, and it will automatically send emails to selected family members to say I need help.

Sleep tracker

I have an app which will help me find my mobile phone. That's very useful when my memory problems cause me to constantly forget where I've left my phone.

I've never dared take a watch in water, but this one is advertised as being OK to take in the pool, so I can use it to track my activity during hydrotherapy, as well as walks and just everyday life.

Activity tracker.

If I hadn't already had the pharmacist put all my pills into prepacks, I could have a reminder on my watch telling me which drugs to take when. (I may still set reminders for the things that don't go in the prepack.)

If I had other kinds of health problems, I might use some of the other apps available, such as the seizure detector, or the diabetes app, or pulse check.

I only received this yesterday, so it will take a while to see if this really makes a difference to managing my health, but it looks promising.

Other blogs and books by the same author

Blogs

Patchwork

Patchwork is an anthology of short stories and poems by author and blogger Iris Carden. In this volume, you will deal with the aftermath of a dog bite in Bad Moon Rising, spend a sleepless night with The Possum in the Roof, and investigate a weird religious cult in The Time of Blood and Death. The print version of the book has a bonus story not in the eBook version.

Beside Still Waters

A book of sermons and brief reflections on Christian Scripture, by Rev Iris Carden. There is no specific order to the items in the book, they are intended to each be a "surprise" in that they are not related to the items around them. It is hoped that in each, the reader will find something new or special, or unexpected, a message from God. Rev Iris Carden has a Master's Degree in Theology and more than 10 years of experience as a Christian minister.

Cat-it-orial

Mr Bumpy is such a talented cat, he even runs his own website: mrbumpycat.com. He is a blogger, and a very bad cat. His favourite hobby is world domination. His next hobby is harassing the humans and other animals he shares a home with. In this book, you can see the world through the eyes of a megalomanicat, and some of the other animals who share his home.

Group Meeting

(Novella) In a facility for people recovering from mental illness: a group of people with sinister pasts starts to be visited by a girl who doesn't exist.

Karlee

Failing author Terry Dixon is made an offer that seems unbelievable. He can have all of his problems solved, have everything he has ever wanted, for a price. The price is something that "will not be too difficult" for him to pay - but it is not specified what it actually will be. With bills mounting up and a deadline looming, Terry agrees to a deal with something he knows nothing about.

About the Author

Iris Carden is a retired Uniting Church minister and former journalist. Lupus forced her to stop working. On good days she writes.

I've been nominated. Please endorse me.

This is an Australian Blog

Some of the issues, resources, information discussed may not be relevant to overseas readers. (Some things may not even be relevant outside of Queensland.)

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Contact Me

My email address is iris@sometimesitislupus.com

Have Something to Share on Sometimes, it is Lupus?

Lupus Links

Do you run a lupus-related website, or blog? Submit your links for the Lupus Links Page by emailing iris@sometimesitislupus.com and using the subject heading "Lupus Links." Tell me your page name and web address. If you have a social media page for lupus awareness/support, you will find you can now add your link to the page directly.

Lupus Business Directory

If you have a chronic illness and own/run a business, you can submit it to the Lupus Business Directory (listing is free). Email iris@sometimesitislupus.com using the subject heading "Lupus Business Directory." Give me your name, your chronic health condition, the name and web address of your business and a picture if you'd like one included.

In Memorium

You can add your personal memorial messages in memory of lupies who have fallen in the battle against the wolf in the comments section of this page. Or you can email them to iris@sometimesitislupus.com with the subject heading "In Memorium".

Warriors' Wall (goes live World Lupus Day, 10th May 2013)

If you are a lupus warrior who has something to say, please email iris@sometimesitislupus.com with the subject heading "Warriors' Wall". Include in the email, a nice clear photo of you, your first name, year diagnosed, country, and what you want to tell the world about lupus. (Up to 100 words.)

Blog written by Iris Carden. Permission is given to copy, with attribution, for non-profit purposes. Picture Window theme. Powered by Blogger.